meredith
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Posts posted by meredith
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Forgot to add: I was told that often times neuropathy improves in the first 6-12 months following treatment, although it can be permanent.
Generally, I think the less severe it is, the more likely it is to improve.
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I LOVE eating! I like to bake as well. When I was going through chemo, I of course couldn't eat much and lost a lot of weight.
My doctor gave me so much cisplatin because she said we were going "for the cure!" She also said I was young and could handle the doses well. At the time, however, I didn't realize I was getting so much, but I'm glad she did it because even after the first dose, my tumor had visibly shrunk (by the way, I have small cell cancer of the cervix, not the lung--though the kind of cancer I have likes to metastisize to the lung).
I would bet that your numbness is indeed due to cisplatin and not any mets. As has been mentioned, the medicine Neurontin might help, so you could ask your doctor.
I really like your attitude and spirit
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Hi Carleen,
My Lord, Keith had a lot of cisplatin and I think it has some of the worst side effects of all chemo drugs. I just finished a prayer for him....
I also had a lot of ringing in my ears, but I never even mentioned this symptom, as I didn't even know it was really related. Even now I still have a lot of crazy sounds in my ears. Has this symptom stopped for Keith?
This neuropathy is such a weird symptom--numbness and pain simultaneously. It always feels like my legs are asleep and I get these terrible aches and sharp, shooting pains. It is often worse at night or if I've been on my feet for too long. I did try Neurontin but it didn't do much good. I also tried quinine, but that didn't help either. I take pain medicine--Hydrocodone--which helps some. But I'm finding I'm having to take more and more of it to get adequate pain relief, and that kind of bothers me.
Also, I did start taking the B vitamins toward the end of the chemo because I didn't know they could help. Now I take a multi-vitamin and get adequate vitamins and minerals from food--I eat like a horse
Take care! Hope Keith is feeling OK (is he?)
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Forgot to add: I had BOTH cisplatin AND VP-16 on each of the 5 days every 3 weeks for 6 cycles.
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Hi there! I read your bio and I'm so glad you are responding to treatment!
Yes, VP-16 and etoposide are the same. I'm already done with these chemo combos and have been since August of 2005.
The reason I ask is because most of the people I've come across were treated with this combo for only 3 days, whereas I got 5 days. Also, most people I've talked to don't seem to have quite the same degree of neuropathy. My neuropathy extends all the way up my calves to my knees and it's painful
I know everyone responds differently to the drugs, but I'm just wondering if my bad neuropathy is due to higher does than what is considered "standard."
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Hi Donna. Welcome--I only just joined this forum a few days ago and already I have found out a lot of information and the people are great!
I had 6 initial cycles of chemotherapy and I did find that it got a bit worse each time. The nausea and vomiting were worse for me, but with medications, it was under control. Ask your doctor for the anti-nausea medication Emend. I think it was very helpful in controlling the nausea/vomiting for several days after chemo.
The PET scan was no worse, in my opinion, than the CT scans. The MRI of the brain that I had was a little weird, but I did it.
Best wishes to you
Meredith
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For those of you treated with etoposide/cisplatin combinations, how much did you have and how often? How many cycles?
I had cisplatin/etoposide for 5 straight days, every 21 days for 6 cycles. I believe this is higher than the standard dose?
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Yes, very encouraging!
They also announced that the new cervical cancer vaccine has been approved. The preventative vaccine is too late for me of course, but I'm glad my 6 year old niece and other girls will probably never have to worry about cervical cancer.
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So, was the carboplatin easier to tolerate? I have heard that it is....
For me, the neuropathy got pretty bad with the cisplatin. I wan't expecting it to be that bad. Of course, I had some prior nerve damage; during my surgery, my femoral nerve in my right leg was "compressed" and the leg was almost totally non-functional. I was using a walker for a couple of months. Use of it has come back, but the chemo induced neuropathy is still really bothering me. I have a lot of leg cramps and sharp, shooting pains, especially at night.
For quality of life reasons, I don't think I want any more cisplatin.
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That sounds very frustrating indeed. Cancer patients and their caregivers have enough to deal with without all that other stuff.
I will definitely keep my fingers crossed for you and your husband finding a good clinical trial!
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That was very good! Glad you're doing so well.
I'm originally from Memphis, too, born and lived there until I was 20. I was just there visiting in February. I miss southern accents!
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I so know how you feel, and I'm so sorry, but trust me when I say that you will recover from this shock. You learn to live with it, but fight it at the same time.
Nobody, not even a healthy person, knows how much time they have. There are so many treatments that are available, and cure or "stable disease" is a very real possibility--just look at all the people here!
When I started reading about my own disease, the statistics said that the average person lives only about 12 months from diagnosis, and I'm still here 15 months later with, currently, no evidence of disease!
You're here, you're kids are too, so take it one day at a time. Be hopeful--you have every reason to be.
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That's very good to hear Shirlie! Stay strong and healthy...
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It's good to hear they let him in the trial.
What was his (and your) experience with clinical trials?
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Yes, mostly the treatments are different. However, from all my research and discussions with doctors, small cell cervical cancer is often treated the same as small cell lung cancer, mostly because there are so few cases of the cervical variety that they don't have a standard treatment protocol.
I see that you have lung cancer yourself and have lost so many family members. We have to find a cure for this cancer crap.
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Yes, I think carboplatin is an option.
When I was referred to the second oncologist, I had mentioned taking carboplatin because I had started to feel numbness, but only in my toes. But he wanted to continue with the cisplatin because I had such a good response with it and he felt that I was young and could handle it. But then the numbness and pain started crawling up my legs and my hands, and so it was discontinued.
Still, looking back on it I'm glad he was aggressive with the treatment, as it seems to have worked for now!
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Thanks! I must have been searching incorrectly because I haven't found one study that included small cell cervical patients specifically.
I will for sure be reading ALL the news updates.
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I see you're NED too! Yeah!
I'm going to keep up-to-date on that virotherapy for neuroendocrine cancers. I e-mailed them last wekk, but they haven't responded yet.
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Thanks Erin! I know that the longer I can be cancer-free, the more I will be looking into this. I have 3 sisters, 2 of whom have all of their working reproductive parts, and they have both offered to be surrogates for me if I choose that.
I had just gotten engaged to be married 3 months before my diagnosis, but I put everything on hold because I was so sick for a while.
I am very sorry to hear about your mom. I imagine losing a mom had got to be so hard. And how great that you now have 3 children after going through infertility! That's inspiring and encouraging to me.
Thanks again,
Meredith
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I am sorry to hear about your diagnosis. Do you feel sort of numb and shocked at the same time? That's how I felt for a while after my own diagnosis.
I know you don't know what type you have yet, but have the doctors mentioned anything about what kind of treatment you can expect?
If you need an ear, I'm here! I really like this forum so far....and the wonderful people as well.
xoxo--Meredith
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Thank you.
It's a rare one for sure. When I was waiting to find out if I had cancer or not, I immediately looked all around for statistics and treatments of cervical cancer, and thought "Well, lots of women are cured of this and live for a very long time." I had seen a few references to the small cell type, but didn't even give it a second thought because all the information was saying how rare it was! So, I was in for a shock when family and I were in the oncologists office and she was telling me I have this rare thing and it's very aggressive and chemo needs to be started ASAP!And when I started doing the research on this type, it was very hard to read about.
But anyway, that's life. I tend to fight it as long and hard as I can, and that's about all I can do.
Hugs to you...ooo
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Sorry you're having to wait. I know it's very hard. I take Ativan sometimes for anxiety, whether for general anxiety about cancer or the bad anxiety before scans.
Hmmm, does your doctor not have someone filling in for him while he's on vacation?
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Waiting is so difficult, isn't it? The anxiety is sometimes overwhelming. May I ask if you have been prescribed any anti-anxiety medication? If not, I would suggest it. It helped me a lot when I was waiting for my initial diagnosis.
I had cervical cancer, so taking the biopsy was not much of a problem, and fortunately I got the results in 2 days.
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I have small cell cancer of the cervix. When it comes to clinical trials (not that I'm considering one right now), I've kind of got the short end of the stick. Most cervical cancer trials involve squamous cell cancers, and lung cancer trials want lung cancer patients.
Does anyone know perhaps if sclc trials would accept patients with small cell cancer in a different organ?
My mom has been communicating with a researcher who is working on a therapeutic vaccine for cervical cancer treatment, but even here they are focusing on treating squamous cell. I think he told her I might could get in compassionate grounds if other treatments don't work.
Interesting side effect from Neulasta
in GENERAL
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Hi there Tom!
I also had Neulasta several times and I did experience quite a bit of bone pain. It felt a lot like bruising, but I wouldn't call it severe. Hope it gets better for you....